Pediatric Case Definition for M.E./CFS

A pediatric case definition for ME/CFS, with accompanying questionnaires and scoring guide, was published in January, 2007 by Haworth Medical Press, New York.

These tools were developed by a group of respected M.E./CFS Physicians and Researchers from the U.S., Belgium, Australia and Japan.

The impetus behind their development was two-fold:

  • To better identify individual cases of pediatric ME/CFS and
  • To better support research into pediatric ME/CFS.

Article written by Margaret Parlor, our Coordinator for Youth and Educational Issues

The authors confront the question whether it is in the best interests of a young person to receive a diagnosis of ME/CFS. The authors defend their decision to publish a case definition, pointing out that the lack of a diagnosis can lead to false assumptions about the child and family and can delay appropriate treatment.

The new pediatric case definition is closely aligned with the Canadian criteria for ME/CFS, which covers both adults and children. Both definitions require chronic fatigue, physical or mental post-exertional symptoms, sleep problems, pain, neurocognitive symptoms, and some autonomic and immune manifestations. Like the Canadian definition, the new definition states symptoms have to occur for 3 months in children before a diagnosis of M.E./CFS can be made and 6 months for adults.

One difficulty in diagnosing pediatric cases is judging whether activity levels are reduced. For adult onset cases, there is a "before" to which an individual can compare activity levels. For pediatric onset cases, many of which are insidious, the "before" is not well established. Therefore, there is more need to look at the young person's level of functioning in comparison to what would be expected for their age.

Considerable thought and discussion go into what conditions would be considered exclusionary and what would not. For instance, depression that explains the symptoms would be exclusionary, but depression brought on by the frustration and disappointment that comes with ME/CFS would not. Active Lyme disease would be considered exclusionary, but adequately treated Lyme disease would not if symptoms of M.E./CFS occur.

The two questionnaires are very helpful. One is for the young person who can complete the information alone, while the other is for young people who need parental help in completing the form. A lot of the information is contextual: age, education, school attendance, etc. The meat of the questionnaire is the section on the symptoms in the case definition. The questions are age appropriate. For instance, instead of asking if a young person has orthostatic intolerance, the questionnaire asks question like do you "feel unsteady on your feet, like you might fall". For each question, the respondent answers yes or no, estimates when the problem started, and rates the frequency and severity on scales of 1 to 7. Having the 7-point scales communicates much more information than a simple yes/no.

The report concludes that the new tools will help not only in establishing homogeneous groups for research, but also in recognizing and accommodating individual cases and monitoring changes.

We would like to remind you of the excellent, comprehensive Teach-ME Sourcebook for Parents and Teachers of Students with ME/CFS and FMS. Chapter 1, which can be viewed on the web site of the National ME/FM Action Network was based on the Canadian Clinical Definition . Teach-ME: Sourcebooks are available for purchase by calling the National ME/FM Action Network at 1-613-829-6667.

To order the Journal of Chronic Fatigue Syndrome Vol.14 (1) which contains the new Pediatric Definition from Haworth Medical Press:
please email: orders@haworthpressinc.com
or call Toll-free: 1-800-429-6784
Haworth Medical Press, 10 Alice St. Binghamton, NY, 13904-1580 USA

Read our Brochure Youth Living with a Chronic Illness

In 1995, our Association published a Youth Brochure entitled: 'Youth Living with Chronic Illness'.

The funding for this endeavour was provided by a grant from the Province of Ontario Ministry of Citizenship's Committee Action Fund and our fundraising efforts.

The content of this brochure has been reproduced in Adobe Acrobat PDF format and you can click on the link below to read it.